Unlike other conditions and life experiences, which only affect a certain percentage of the world’s population, the end-of-life is a stage in the process of living, which all people will eventually face. Estimates are there are currently twenty-million people worldwide who need some form of end-of-life care. In the United States, on average, seven thousand people die every day from various illnesses. At some point in their careers, all health professionals who provide direct patient care will most likely encounter an actively dying patient. Therefore, they must understand the issues of concern and the clinical significance of this process.
End-of-life research states advances in healthcare have changed the trajectory of the end-of-life. With advances in medicine, the length of an average life has become longer. Thus, the end-of-life varies significantly from person to person, which makes the period of end-of-life challenging to define.
The term end-of-life definitions vary in the healthcare literature. One of the more common definitions is one that gives a time frame to the estimated length of life, with the most commonly cited time frame as a period of fewer than six months of estimated life. Other end-of-life literature focuses on the last days, hours, or minutes of life. Meanwhile, others define the end-of-life as synonymous with the dying process. The National Hospice and Palliative Care Organization (NHPCO) states that end-of-life care or hospice care commences when a person has a diagnosis of a terminal illness with less than six months to live, and curative treatments are no longer options.
Healthcare professionals must be aware that while the definitions of end-of-life may vary for everyone, the end-of-life is a process that all humans experience. Some patients may receive end-of-life care for months, while others may only receive it for days. Healthcare professionals must be aware and recognize disease trajectory in those with terminal or life-limiting illnesses. In this way, they can prepare for the issues of concerns which these patients face.
There are many areas of concern at the end-of-life for both the dying patient and their family members. These areas are communication, cultural considerations, plan of care, ethics, pain and symptom management, and termination of care. The discussion of these areas of concern below is a summary of the existing literature. Healthcare professionals must recognize that some of these areas of concern might not apply to the patient they are caring for, and they must be able to adapt them as necessary.
End-of-life conversations are never easy conversations to have. These conversations can be more difficult when the healthcare team member lacks training and expertise in end-of-life discussions. However, research consistently shows patients value any end-of-life conversations when the healthcare team members use open and honest communication. Further, this openness represents an essential element of establishing trust between the patient and the healthcare team. To help alleviate this potential discomfort and guide these conversations, the healthcare literature suggests providers and their healthcare teams follow guidelines recommended by NHPCO, which reminds healthcare professionals to speak with compassion.
The first of these guidelines is to assess the patient’s readiness to have end-of-life discussions and talk about the dying process. Research suggests healthcare team members with long-standing and existing relationships with the patient should be the ones to assess the patient’s readiness to begin end-of-life discussions. There is no formal tool to use to determine this readiness. Instead, the literature suggests that healthcare team members with established patient rapport assess the patient’s willingness to hear their diagnosis of fewer than six months to live and be present when the provider conveys this news. It is also encouraged that the patient should have support people, such as family or close friends, with them when these conversations occur; this allows the patient to have emotional support as well as ask any questions that the potentially overwhelmed patient cannot ask.
Those healthcare team members who have established rapport with the patient can help to recognize any potential fears the patient may have while using direct and honest communication with them. The overall goal of these conversations is to inform the patient and help establish a patient-centered plan of care that focuses on quality of life.
Some examples of conversational prompts from the literature that can be used to start end-of-life discussions are given below:
Assessing readiness to hear the diagnosis of fewer than six months or less to live:
“What do you know about your condition?”
“What do you think will happen?”
Asking how much the patient wants to know
“Some of the patients I see want to know a lot of details about their diagnosis, while others prefer just a general discussion. Which do you prefer?”
This conversation prompts the patient to tell the provider how much they already know and how much they want to know about what their immediate future might hold. By using these conversational prompts, the patient begins to direct their individual plan of care. This direction allows the healthcare team members to understand the patient’s needs and wishes, which enhances their quality of life.
Another guideline used in end-of-life conversations is directed at the language healthcare team members should use. Healthcare team members are reminded not to give the patient false hope and avoid phrases that might convey a sense of failure.
Phrases to avoid:
“There is nothing more we can do for you,”
“You are losing your battle with (disease)”
“We can offer more options to control the symptoms you are experiencing.”
The final guideline healthcare team members need to follow is to be aware that a patient’s cultural preferences may influence how end-of-life discussions. Cultural preferences can dictate when end-of-life conversations can initiate, to whom that information is directed, and how information is conveyed. By being informed of their patients' cultural preferences, healthcare team members can “avoid stereotypes and incorrect assumptions while enhancing patient-centered care.” Understanding the patient's cultural affiliations goes back to knowing your patient and having a rapport with them.
The definition of culture is the ideas and beliefs that “underpin and influence people's actions and thoughts in particular situations.” Culture can refer to racial and ethnic groups as well as social constructs. Regardless of how cultures form, healthcare team members need to understand that cultural affiliations can shape how individuals make meaning of illnesses, including the end of life. Research shows when a proper cultural assessment is completed and used to inform end-of-life care, the quality of life for the dying patient and their family members substantially increases.
Several different cultural assessments can be used to assess a patient’s culture. One of these is the CONFHER Model. This model was created by a nurse researcher named Fong in the 1980s, but this classic model is used in cultural assessments today. This model guides the healthcare team member in asking questions about the patient’s preferences in several categories to understand how their culture may influence their perceptions and the meanings they ascribe to illness. Combined with the CONFHER Model are also examples of specific questions from the Oxford Textbook of Palliative Care in Nursing to obtain a comprehensive cultural assessment.
The first category in the CONFHER Model directs the healthcare team member to ask about the patient’s communication. The healthcare team member asks what the patient’s primary language is, what the patient's understanding is of common medical terms such as “pain” and “fever,” and what nonverbal communication they use daily. Necessary to include in this category are questions about those in the healthcare team who will provide care for the patient.
“We want to make sure we respect you in all ways possible while we are caring for you. Are you comfortable with both male and female caregivers, or do you prefer one or the other?”
This category is used to assess the orientation of the patient to values and with which specific cultural group they identify.
Here the healthcare team member can say,
“We want you to receive the best care possible. Is there anything we should know about any customs or practices that are important to include in your care?”
When asking to which cultural group the patient identifies with, a direct question is often best. A statement such as,
“We ask all of our patients what cultural group they belong to so we can try to accommodate any cultural needs you might have. To which cultural group do you belong?”
In this category, the healthcare team member asks the patient about their preferences related to nutrition. The goal of these questions is to learn what the patient can eat and if there are certain foods that they avoid due to their culture, such as pork. An important area to consider in this portion of the assessment is how the patient feels about artificial hydration and nutrition.
This category assesses family relationships relevant to the patient. Healthcare team members are encouraged to ask questions to understand the patient’s family structure.
“Who is the head of your household?”
“Who makes the decisions in your family?”
“Is it important for you to have family or friends present while you are sick?”
“Should I speak directly to you about healthcare decisions, or is there someone else in your family with whom I should be discussing decisions?”
The healthcare team member asks questions about health and health beliefs. It is important to remember that not all cultural groups subscribe to the germ theory. Some cultures believe illness can be caused by something being out of balance, a result of misdeeds, or caused by evil spirits. To understand a patient’s health beliefs, the healthcare team member can ask the patient what they do to stay healthy and how they explain illness.
Another important component of a cultural assessment is to discern the person’s education level and how they prefer to learn. Questions such as
“How much formal education did you complete?”
“All people learn differently. Some of our options for teaching you are small group discussions, one-on-one teaching, reading, or watching videos. Which do you prefer?”
Spirituality and Religion
Because some religions require patients to follow a diet or a prayer ritual, healthcare team members need to respect these preferences.
By asking questions that address the above categories, the healthcare team member can complete a comprehensive cultural assessment of the patient for whom they are caring. This assessment should be used to inform the patient-centered plan of care. Respecting the patient’s unique cultural needs while developing and implementing a care plan will help enhance their quality of life.
Plan of Care
The planning and delivery of care to patients who are experiencing the end of life is complex. The ideal way to plan end-of-life care for all patients is at or near the time of the terminal diagnosis. Frequent “clinician-patient conversations are needed to ensure that the patient's individual preferences” are maintained during end-of-life care. The Institute of Medicine recommends these conversations happen early in the diagnosis stage of an illness so that advance planning can occur. This planning process includes formal conversations about the end of life as well as drafting advance directives. The planning process helps ensure the dying patient receives care that incorporates their own individual goals, values, and preferences. The research shows when end-of-life care is individualized for the dying patient, their quality of life is enhanced. Healthcare team members must remember that the quality and not the quantity of the patient’s life is the focus of end-of-life care.
There are several tools that healthcare team members can use to quantify and maximize the quality of life for the dying patient. Providers are encouraged to use the tool which best fits their patients’ individual needs. Some quality of life scales were specifically designed for certain patient populations, such as those with breast cancer (QOL-BC) and those with heart disease (Cardiac Health Profile). However, since many healthcare team members often care for patients with a variety of diagnoses, a more generic tool might be more useful. The World Health Organization designed the WHOQOL-BREF to be used for all patients regardless of their diagnosis. The WHOQOL-BREF seeks to measure the patient’s quality of life in four domains. These domains are physical health, psychological health, social relationships, and environmental resources. In the domain of physical health, patients are asked to respond to questions about activities of daily living, energy levels and fatigue, sleep and rest, and pain. The psychological health domain measures self-esteem, spirituality and religiosity, and positive and negative feelings. The facets measured in the domain of social relationships include personal relationships, social support, and sexual activity. The environmental resources domain measures financial resources, healthcare accessibility, home environment, and participation in leisure activities. The WHOQOL-BREF measures all four domains in twenty-six questions, which can be given to the patient to complete and scored by the healthcare team member. The healthcare team member can then use the patient’s answers to these domain questions to inform their plan of care.
The assessment of the patient’s quality of life should inform the plan of care given. Research suggests care delivery models that integrate services “across the care continuum with service involvement triggered by the patient’s needs” are those that should be used at the end of life to maximize the patient’s quality of life. These integrated services may include but are not limited to palliative care, social work, physical and occupational therapy, mental health services, social work, spiritual care, and respiratory therapy. By integrating care specific to the patient’s needs, the dying patient's quality of life is substantially enhanced.
The end of life can be rife with ethical dilemmas. The healthcare team members need to comprehend the principles of bioethics fully, so they can face potential ethical dilemmas that might occur for their patients and family members at the end of life. The healthcare team member must recall that the goal of end-of-life care is to enhance the quality of life for the dying person and thus must always keep this goal in mind when helping the patient and family with ethical dilemmas.
The first principle of biomedical ethics is autonomy, which is the patient's ability to choose and have self-determination. When looking at potential ethical dilemmas that may occur at the end of life, the healthcare team member must assess if the patient can make decisions for themselves autonomously. The team member must assess the patient's cognitive and developmental ability to understand the disease as well as care options and be able to make informed decisions related to those options.
The ethical principles of beneficence and non-maleficence merit concurrent consideration. Beneficence, or doing what is best for the patient, and non-maleficence, not causing the patient harm, are considered as balancing one another. The healthcare team members need to do as much as possible to benefit the patient (beneficence) while taking the necessary precautions not to prolong the dying person's suffering (non-maleficence).
The final ethical principle for consideration in end-of-life care is justice. When considering the principle of justice, the healthcare team member needs to weigh what is fair or just for the dying patient and act according to those interests. By keeping all four of these principles in mind, the healthcare team member is likely to help the patient and family make ethically sound decisions and enhance their quality of life.
One of the potential ethical dilemmas healthcare team members can face when a formerly component dying patient has lost their decision-making ability. If the dying patient is unable to state their wishes, the healthcare team member must look to an advance directive. An advance directive is a legal document that outlines the patient's wishes and, in some cases, names a durable power of attorney, a person who is designated to make healthcare decisions for the patient. Adhering to the wishes of the advance directives is the ideal way to maintain the ethical principle of autonomy. However, reports are that only twenty-six percent of Americans currently have an advance directive in place. The most frequently cited reason for people not to have advance directives is a lack of awareness of why this document is needed. Having advance directives in place for dying patients reinforces the need for early end-of-life conversations with the patient and family members. In these conversations, the dying person is encouraged to choose a person, who may or may not be a family member, who will respect their wishes, make decisions that align with those wishes, and advocate for those wishes should disagreements occur.
Another ethical dilemma healthcare team members can face when caring for dying patients is when the patient's care options or the durable power of attorney cause unnecessary prolongation of suffering or are medically futile. Recalling that all end-of-life care should be patient-centered, healthcare team members should consider futile medical care can take a variety of “forms and be defined as futile only in the context of each patient’s situation.” Examples of such care options as documented in healthcare literature are cardiopulmonary resuscitation on frail and elderly dying patients, completing screening tests that will not influence the comfort care given, and invasive procedures such as placement of endotracheal tubes and surgeries that will not add quality to the life of the dying individual. These inventions might succeed in "providing physiological effects yet provide no benefit to the patient." Of course, all interventions merit consideration within the context of the patient's diagnosis and their illness trajectory. Health team members should also be aware that the patient's culture often influences end-of-life care decisions. Therefore, a thorough cultural assessment completed early in the end-of-life care might help healthcare team members, dying patients, and their family members understand expectations of care.
When ethical dilemmas occur, and there is disagreement on how to proceed with the end-of-life care for the dying patient, ethics committees can convene. The purpose of ethics committees is to advise the hospital staff, not to take over or direct patient care. Although the decisions of ethics committees are not legally binding, these interprofessional committees, including physicians, nurses, chaplains, social workers, and case managers, serve to offer professional advice in situations where conflict has occurred.
Pain and Symptom Management
There are many symptoms patients face at the end-of-life, which can affect their quality of life. With proper symptomatic control, healthcare team members can enhance the quality of life for their dying patients. Symptoms that affect the physical domain include pain, respiratory, and GI symptoms, as well as mobility issues. Symptoms such as depression and anxiety affect the domain of psychological health. It is the responsibility of all healthcare team members to assess these symptoms and work with the patient to control them as best as possible.
The research shows adequate pain management is one of the most discussed concerns for patients facing the end of life. Healthcare team members are encouraged to complete comprehensive assessments of the patient’s pain on a routine basis and structure care around these assessments, knowing that pain control frequently changes. Choosing the correct assessment tool for measuring a person’s pain depends upon the developmental and cognitive ability of the patient. The Child and Infant’s Postoperative Pain Scale (CHIPPS) can be used for neonates and infants, while the PQRST scale is useful for all adults who are verbally capable of expressing their needs. Healthcare team members should bear in mind some scales exist for those who are not capable of verbally expressing their needs. Scales such as the PAINAD can be used when patients have a diagnosis, such as dementia or expressive aphasia, that limits their ability to self-report their pain. Regardless of the type of scale used, a thorough self-report is needed from the patient, which should inform the physical exam completed by the healthcare team member. The healthcare team member should differentiate the different types of pain the patient is experiencing (i.e., neuropathic vs. visceral) and use this comprehensive data collection to help control pain symptoms. There are a variety of ways pain is treatable. Those that are pharmacological include administering opioids, non-opioids, and adjuvants such as antidepressants and corticosteroids. Non-pharmacological treatment for pain includes heat/cold therapy, meditation, massage therapy, and music therapy. The type of treatment chosen should be based on a comprehensive patient assessment and should include the patient’s needs and desires. Also, depending on the state laws where the patient receives end-of-life care, medical marijuana is an effective treatment for pain management.
One of the most common respiratory symptoms patients can experience during end-of-life care is dyspnea, or difficulty breathing. Research shows that as many as 70% of all dying patients report dyspnea symptoms during end-of-life care. As with pain, the healthcare team members must complete a thorough assessment of dyspnea symptoms. This involves assessing the rate, depth, rhythm, pattern, and effort of breathing. Assessment tools, such as the Respiratory Distress Observational Scale (RDOS), are available to help guide healthcare team members' assessments. The RDOS measures a patient’s heart rate, respiratory rate, restlessness, paradoxical breathing pattern, accessory muscle use, grunting at end-expiration, nasal flaring, and look of fear. These categories give the healthcare team members comprehensive data to treat the symptoms of dyspnea.
Pharmacological treatments for dyspnea include bronchodilators and the use of opioids. Non-pharmacological interventions include position changes, oxygen therapy, and energy conservation techniques. Comprehensive and frequent assessments of dyspnea must take place, so treatment options change as symptoms and patient status change.
GI symptoms that can occur at the end of life include anorexia and constipation. Both can be symptoms of the terminal disease the patient is living with, side effects of treatments, or both. Proper assessment as to the cause of these symptoms is key to treating them. Pharmacological treatments of anorexia include antipsychotics such as olanzapine and corticosteroids, while non-pharmacological treatments include calorie-rich diets, foods patients enjoy, and odor control. Constipation is another GI symptom patients can experience at the end of life. Again, a thorough assessment is needed to determine the cause of this symptom. Proper bowel assessment and examination of medication side effects merit consideration when assessing the patient with constipation. A common pharmacological treatment when constipation results from opioid use is a GI motility stimulator. Non-pharmacological interventions include hydration, fiber-rich diets, and mobility.
One of the most common mobility symptoms patients can experience at the end of life is fatigue. Fatigue is not general tiredness; patients instead express it as incapacitating exhaustion. This exhaustion can several affect the quality of life of the dying patient. Healthcare team members should know there are several validated tools to measure fatigue in patients. Among the most frequently used tools is the FACIT Fatigue Scale (Version 4). This 13 question Likert scaled tool can assess how fatigued a person is and how this symptom limits their ability to engage in social interactions. Once the team completes a proper assessment of the patient’s fatigue, the healthcare team members can work to control this symptom.
Pharmacological intervention for fatigue should first examine the cause. Some causes of fatigue with clear etiology include dehydration, anemia, infection, and depression. In these cases, the symptom of fatigue is often relieved with the treatment of the underlying cause. In cases where fatigue has no known etiology, stimulant drugs such as methylphenidate and steroids have shown to be effective. Non-pharmacological interventions include exercise, physical training, energy conservation, and energy restoration. To choose the most appropriate treatment for the patient, continuous assessment is necessary.
Psychiatric symptoms such as depression and anxiety affect the psychological health domain of the dying patient. These symptoms can range from moderate to severe and should be assessed using valid tools to direct treatment. A plethora of tools exists to measure the symptoms of depression and anxiety. The Self-Stigma Depression Scale and the Hamilton Depression Rating Scale can be used to measure depressive symptoms. The General Anxiety Disorder (GAD-7) and Hamilton Anxiety Rating Scale can measure anxiety symptoms.
Pharmacological interventions include SSRIs and NDRIs, such as bupropion. Non-pharmacological treatment for depression includes cognitive behavior therapy and exercise. Among the most common pharmacological interventions to treat anxiety symptoms are benzodiazepines. Cognitive-behavioral therapy, as well as meditation, is effective in reducing anxiety symptoms.
The symptoms of pain, dyspnea, anorexia, constipation, fatigue, depression, and anxiety are among the most common symptoms patient at the end of life can encounter. Healthcare team members must screen for these as well as any other symptoms the patient may experience. Upon completing an adequate assessment, the patient and the healthcare team member can develop a plan of care that will help to enhance the patient’s quality of life.
Termination of Care
When symptoms are no longer manageable, or patient suffering is too great, termination of care must be considered. Termination of care is not something decided on a whim; rather it is part of the initial end-of-life discussions. When the treatment provided by the healthcare team is medically futile or prolonging patient suffering, terminating the care and allowing the patient to die is necessary. If the patient can participate in these decisions, it should be the patient’s decision when they want to terminate care. If the patient is developmentally or cognitively capable of making such decisions, this responsibility falls to a power of attorney.
Termination of care decisions can also be informed by recommendations from ethics committees when ethical dilemmas are present. When recommending termination of care for the dying patient, healthcare team members are encouraged to bear in mind the previously discussed issues of concerns, including communication techniques, cultural considerations, and quality of life. At the center of every conversation about the termination of care should be the patient and their quality of life.
Each healthcare team member is also a member of their particular professional discipline. Each team member has a unique perspective to add to the healthcare team but is subject to limitations by their scope and standards of practice. Each healthcare team member must follow the scope and standards of their discipline while providing end-of-life care. Scopes and standards define what care each discipline can provide, to whom and how that care should be delivered. When providers, nurses, respiratory therapists, social workers, spiritual providers, and other healthcare team members act within their scope and standards of practice, the quality and safety of the care the patient receives are greatly enhanced. When these disciplines work together as an integrated team, the care the patient receives and participates in is greatly improved.
The interprofessional team which provides care for the dying patient consists of several different team members, each with their unique roles. The hospice physician directs the care of the dying patient. However, it is essential to consult with an interprofessional healthcare team. These include nurses, therapists, social workers, and spiritual providers. Nurses provide direct patient care and medication administration as well as a continual assessment of the progression of symptoms. Respiratory therapists administer oxygen therapy and monitor the deterioration of the respiratory system. Physical and occupational therapists work with the patient to enhance the functional activities of daily living. Social workers direct patients and families to social resources and facilitate the application and delivery of these resources. Spiritual providers support the spirituality and religiosity of the dying patient.
Interprofessional care requires effective communication among team members and can be streamlined using communications tools such as SBAR and Milestones Communication Approach. These tools help healthcare team members communicate necessary patient information effectively and in a streamlined manner. Further, these communication tools allow different disciplines to communicate important information for patient safety to enhance the quality of care. Research consistently shows when all healthcare team members remain informed of patient statuses and changes to those statuses, better patient outcomes occur.
For the best patient outcomes to take place, all healthcare team members must understand their roles for the patients and those of the other disciplines involved with patient care. Understanding how their part of care integrates with the scope and standards of others is paramount to functioning effectively as a team. When healthcare team members clearly understand their roles and the roles of their colleagues, patient outcomes are enhanced.
End of life care requires an interprofessional team approach, including physicians, specialists, specialty-trained nurses, therapists, counselors, pharmacists, and even other non-medical staff, as well as the patient and their family, all collaborating across disciplines to achieve optimal patient results. Every member of the interprofessional team should communicate with the team so that one universal message is sent to the family and patient. [Level 5]
The end of life is never a pleasant experience for the family or the clinicians. Nurses play a vital role in relieving anxiety in the caregivers/family members and developing a relationship with them. Nurses continually monitor the patient's level of impairment, physical limitations, and cognitive decline. When the patient has abnormal behavior, this has to be explained to the patient. Nurses should also educate the family that it is normal to feel guilty, but no one is at fault. The family has to be educated on all the medications and ways to make the patient comfortable. The key is not to erode the quality of life of the patient and family.
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